Reclast pro and con

Hi
Hiw fo you take tymlos? Is it a shot.
I see my endocrinologist this Friday regarding my new fractures after 3 yrs. I am pretty devastated . I was supposed to have another reclast Infusion in june so I don't know what the plan will be now.

Yearly infusion. Haven't had Tymlos yet. Hearts for your pain.... hope you do well.

Hi
Hiw fo you take tymlos? Is it a shot.
I see my endocrinologist this Friday regarding my new fractures after 3 yrs. I am pretty devastated . I was supposed to have another reclast Infusion in june so I don't know what the plan will be now.

Thank you. I have 24 more replies to look at and have yet to see a positive one. Someone tols me to put reclast in the search magnifying glass and the were over 5000 comments. I was led to beleive it was a one and done but it appears some are on it for 2,3, 04 more years.

Hello @hedynevada01, welcome to Mayo Clinic Connect. Many members have expressed concerns about starting powerful medications such as osteoporosis medications. With only a handful of options currently available, it is understandable to have reservations. Many members have also recently discussed the impact of reading so many negative experiences on community forums has had on their treatment plans.

You may find the following discussion a good counter-balance to your feeling overwhelmed and apprehensive:

"Reclast - Please share your positive experiences"
- https://connect.mayoclinic.org/discussion/reclast-please-let-me-know-your-experience-with-this-infusion/
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Another discussion you may find worth spending some time participating in focused on Good Vibes Only is:

"Positive vibes ONLY thread"
- https://connect.mayoclinic.org/discussion/positive-vibes-only-thread/
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These discussions focus on what some members feel is a "pile on" effect of bad experiences vs. getting to also read when treatment is successful for many. As with any medication, we all react so differently to each and every medication and it is difficult, if not impossible, to know exactly how another member will react to their medication.

@hedynevada01, Have you had a chance to talk with your prescribing provider about your concerns and what you should be looking for after taking the medication in addition to possible alternatives if you react poorly?

Tymlos is a daily injection. It's an anabolic bone building drug very similar to Forteo. It can be taken for up to to two years. There are three anabolics: Tymlos, Forteo and Evenity. Evenity is a monthly infusion and can be taken for up to one year. Tymlos and Forteo are daily injections (with a "pen", pretty easy to do). I wanted to build up my bone density before "maintaining", hence the anabolic first. They aren't as effective if you've been on Reclast or another bisphosphonate already (since bisphosphonates "coat" the bones the anabolic's don't work as well, but can still increase the density). Reclast is a strong bisphosphonate. Other bisphosphonates include Fosomax (Aledronate), Boniva, Etc. Another option is a Prolia shot every six months, it's very good at keeping individuals from fracturing UNTIL you need to come off of it (like all they eventually cause issues with long term continuous usage) - they have not yet found a safe way to stop taking it without experiencing a huge drop in density and likely fractures. I won't take Prolia until they find a way to come off of it safely or until I"m in my 80's when I am not as concerned with long term usage of it (I'm only 54 currently so it's a ways off). I did two years of Tymlos to build up my bone density before switching to a maintenance drug, now will do a reclast infusion to "lock in the gains" I've made on Tymlos - the current plan is reclast infusions for 3 years and then likely 4-5 years of no drugs until they see my bones starting to decline again (since bisphosphonates build up and stay in the system) and not yet known for beyond that, but hopefully there will be some new options by then!

Hi
Thank you for explaining that well . I wonder why my Endocrinologist started me on the bis phosphinate first. I guess.
Maybe because They only found out I had osteopenia when my first fracture happened. I was 63. My GP never did bone density on me because she said I wasn't high risk.Well that's crap. If they would have done it when I was 55.Maybe they could have seen I was having issues and I could Have went on a bone Builder. I can't go backwards but I am so annoyed. I have been trying to get An mri for a year now. I just felt that I needed them to check my spine
no one listens they always say no. I will not take prolia. It will be interesting to hear what he has to say on friday. I am scheduled for june to have my infusion. The medication is at my pharmacy. You have explained more to me than my physician. Thank you

I don't believe the anabolic bone building drugs are usually considered unless you're already well into osteoporosis (and insurance will usually only cover them if you're at high risk of fracture or have already fractured due to osteoporosis). The bisphosphonates are the most "common" defense to stop/slow bone loss. My sisters was caught just pre-osteoporosis (-2.4 t-score) so she went directly onto bisphosphonates and has maintained the same density. Mine was already well into osteoporosis at my first DEXA (spine -3.5 with the lower lumbar -.4), so didn't want to "maintain" that hence the bone building drug first and now that it's a bit better will go onto the bisphosphonates to maintain where I'm at. You can still take the bone building drugs after, they just aren't quite as effective but can still build bone! Note that Evenity, for example, is only indicated for those that have been on other drugs for two years without improvement (so essentially to have insurance cover it you have to have used a bisphosphonate for two years with poor results or have a doctor convince them why it's necessary). Why, well, I understand part of it was how their FDA approval reads but mainly I imagine due to the fact that it's around $10k per infusion so insurance doesn't want to approve it unless they absolutely have to. My insurance refused both Tymlos and Forteo initially, but my bone doctor appealed and they eventually agreed (it took several months). I would also note Evenity has only been around a few years and Tymlos not much longer so Forteo would likely have been the only anabolic option when you first fractured. It's ridiculous how they won't do DEXA scans (insurance standard notes they won't cover them until 65 except in specific circumstances). I started requesting them when I was 40, I got one doc to agree and then insurance refused and my appointment was cancelled. My next doc simply refused to order one regardless of my high risk family history - even when I went through menopause early. Was super frustrating. I hope your appointment goes well on Friday and you get your questions answered! My Reclast infusion is on the 14th (fingers crossed it goes well!).